EB Connect

Group shot from DEBRA America gathering.

We are pleased to be able to share with you EB Connect, a private online social collaboration platform for the global EB community.

EB Connect features many different groups for different types of EB, different age groups etc. that will enable you to connect with other members of the global EB community. One of these pages is a dedicated DEBRA UK page, which we hope will prove to be a useful resource that will enable you to connect with other community members from across the UK to share experiences and ideas, to make friends, or to just have a chat.

The DEBRA UK page is brand new and thus to maximise the opportunity to make these vital connections it would be great to have as many members of the DEBRA membership and wider EB community signed up as possible, so please do tell other people you know with, or affected by EB, about EB Connect.

EB Connect is a completely free online resource for the EB community. To sign up please visit this page and then choose which groups you wish to join, we hope this will include the DEBRA UK group.

We hope that you will find this a useful resource to help you connect with the wider EB community. Please do let us know what you think of EB Connect by emailing [email protected].

Latest

DEBRA UK holds panel discussion at the LifeArc Translational Science Summit

DEBRA UK member and ambassador, Lucy Beall Lott, Vice President, Graeme Souness, CEO, Tony Byrne, and Director of Research, Dr Sagair Hussain, held a panel discussion at the LifeArc Translational Science Summit at the Business Design Centre in London.
01. Parent and Sibling Experiences of EB - interviews
Things to do before the event

Find out about the important things there are to do before you come to Members' Weekend.
DEBRA UK partners with the Cancer Research UK Scotland Institute to tackle early onset cancer in patients with RDEB

DEBRA UK is pleased to announce a new long-term research partnership with the world-renowned Cancer Research UK (CRUK) Scotland Institute, formerly the Beatson Institute, in Glasgow, UK.

Books by the EB community

A list of books written by members of the EB community.
Togetherall online community support

DEBRA members have free access to online mental health service Togetherall, where they can share experiences and support each other in a safe and confidential community.
Accessing specialist EB healthcare services in Scotland

For EB patients and their families living in Scotland, specialist EB healthcare services are based out of the Royal Hospital for Children in Glasgow (paediatrics) and the Glasgow Royal Infirmary (adults).
Member events

Find the latest member events that you could join to connect with others living with EB.
Become a member

If you or a family member live with EB, are a carer or someone who works with people affected by EB, then you can become a DEBRA member. Find out how.
Member stories

EB can have a huge impact on not just the individual’s life, but their family too. Meet our heroes who have bravely shared their story about what it’s like to live with EB.
End of life & bereavement

We can offer a listening ear when grieving, refer you for further support in your local area, help make funeral arrangements, help you access benefit entitlements, as well as assist in creating a DEBRA remembrance page.
Learning & education

People living with EB may require support in their educational journey, as well as an understanding of EB by their schools and peers.
Work & employment

If you are living with EB you may require some support throughout the employment process - from job searching and interviewing to understanding workplace and employment rights.
Finances & benefits

People living with EB, and their families may be entitled to certain government benefits or other schemes for financial support, including grants provided by DEBRA.